Monthly Archives: August 2011

In my last entry I wrote a poem dedicated to my husband on the sixth month anniversary of his death. I was delighted to receive a comment from ‘Huntington’s Queensland’ requesting permission to use a poem featured in my local press and also my poem ‘For Steve’ to be used on another occasion.

Huntington’s Queensland featured ‘The Terminology’ in their July Newsletter on Page 5. A link is given below:

Their approach reminded me that I need to try getting my act together and sort out my page so that I include more links to other HD Organisations and help and support. Today I have had a bit of a play around and hopefully more and more links will appear to the right as time goes on but it’s all still very much a work in progress.

On the writing side… Sales on my book appear to be slowing down if I look at the Amazon Ranking in isolation but I won’t know how many I have sold until December. This is where the Publishers send out stats and royalty cheques twice a year. It’s a bit of a pain in terms of being impatient lol.

I have a few Huntington’s related events coming up. The Huntington’s Disease Association (HDA) Annual General Meeting in October and also a Pre-Christmas Fair. Both would be great platforms to open a stand (subject to permission from the organisers of course) but I have another dilemma.

When I had my stand at the CarersWeek event in June I couldn’t bring myself to simply plug my own book when I am so aware there is other useful information out there that needs to be seen by carers. To that end I took samples of books such as Hugh Marriott’s ‘Selfish Pig’s Guide to caring’ and Jimmy Pollard’s ‘Hurry up and Wait’. Had it been available at the time I
also would have plugged Steve Smith’s ‘Neuro Care Manual’ which I can’t praise highly enough!

So my question to myself is this? Should I spend my time; money and emotional expense on selling what may be only one or two books of my own and come out worse off, or do I simply keep on plugging away for me and my fellow authors in the comfort of my own home?

The emotional expense bit is key here. The events I would be going to would be bringing me face to face again with HD. It’s only been six months since Hubs died. As it is I go every so often to the London Branch meetings of the HDA. However, it takes a lot out of me emotionally and a big part of me thinks I may be better off taking things a bit slower. There’s also a bit of me feeling guilty to Steve’s memory that I am focussing on others and not him personally. Hard to explain but I think those who have grieved/are also grieving may understand where I am coming from.

We shall see how it goes but I am aware if I want to capitalise on sales I need to get my butt into gear. Therein lays another decision. Do I arrange the reprint sooner rather than later to take out the typos etc before the big push or wait until I can justify the funding better?

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Huntington's Disease Association
The Huntington’s Disease Association is a great source of information on Huntington’s and also provides support through its Message Board feature where other carers and sufferers come together to discuss living with HD